The landscape is vast, and much is obscured by mist. Some things are known, others knowable, perhaps still others, unknowable.
Science and patients as part of clinical trials, done formally or on their own, can push away some of the mist, bringing heretofore hidden details about chronic lymphocytic leukemia into the open, at last.

Tuesday, May 10, 2011

As I tell my wife, if it's not one thing, it's another. Seriously. I have a new health complaint everyday. Sometimes it's a sore foot. Next day, a painful back. The next, pain in my abdominal nodes. And the next, a headache.

Occasionally, I have a good day. That is a bad thing. If I go through the day, and say to myself, you know, I had a pretty good day! In fact, I feel fine! How nice!

That means I will be in the hospital the next day. No good day goes unpunished for me. I'm serious. This ALWAYS happens. ALWAYS. Without exception. EVER.

I had a good weekend. I felt kind of tired Saturday, but I got the truck out and finally clean out the pile of stuff the gutter guys left when they re-did my gutters. I told them I'd dispose of things if I could get a cheaper price.

Sunday, another good day. Church was nice. By Sunday afternoon, I thought maybe I had crossed the creek. My painful nodes were history. My fever was over and done with. I had lots of energy and got lots done.

Never tempt fate.

The next day, I got a copy of my lab results from Friday. They show 2% neutrophils. That's not good when your WBC is 4.4. Doing the math, that means my absolute neutrophil count is about 100. Way below the 500 cut-off for serious neutropenia. It's at the same level that I had when I was in the hospital with a 105 degree fever. It's tied for the worst I've every had.

I'm off CAL-101, and I think they are trying to ditch me from the trial forever. Stanford wants me to tell them that I've progressed on CAL-101, but I don't know if that's true. I know this latest blood work suggests that my CLL has skyrocketed, but I've been off CAL-101 for almost three weeks.

Listen to your body. If it is telling you that you are doing well, you are in big trouble.

Thursday, May 5, 2011

Two weeks ago, I went to Stanford for a routine medical appointment. Dr. Coutre was not there, so I saw another doctor.

After the three-hour drive home, I got a message from the clinical trial coordinator that my liver enzymes were elevated, and I must stop taking CAL-101. The coordinator explained that this is not uncommon, and most everyone who has elevated liver enzymes goes back on the drug at a lower dose. (I've been on 150 mg, twice a day.)

Well, it wasn't that simple. My lymph nodes started increasing in size in a couple of days. (CAL-101 works very, very fast in reducing the nodes; it apparently works just as fast in the opposite direction.)

Anyway, by Saturday night, I was in agony. My lymph nodes apparently started pressing on this organ and that. I also spiked a fever. So I went to the ED. They released me after prescribing Levaquin (sp?). By Monday night, I was in poor shape again, and went back to the ED. They did not admit me (yay!!!), and I went home.

I had my liver enzymes tested after one week. The enzymes had not gone down to a normal level.

Meanwhile, two weeks after going off CAL-101, I am very unhappy. I have massive nodes again, I have significant fatigue (starting on Wednesday) even though I am sleeping well for about seven hours a night, which is normal for me. The sleep does not seem to refresh me.

I've faxed the blood work to UCSD, Dr. Kipps' nurse. That was a week ago. Silence.

I did get a call from Dr. Coutre yesterday, which was nice. He wants me to wait several more weeks and then evaluate what has happened to me.

I am very disappointed, of course. My lymph nodes went down fast, and stayed down. I felt great. My blood numbers were OK, and things seemed to be going as I had expected. Now, I am in a bad place.

I think the ideal would be to stay on CAL-101 at a lower dose. I don't know if that will be offered.